Sep 08

No One Brings a Casserole

Screen Shot 2013-09-07 at 4.47.12 PMOnce again, I am attempting to sleep in a chair in an emergency room. It’s been three days since the kid was discharged from a three-month placement. He started in a CBAT (useless). From there, where he received no care, he was moved to a psychiatric unit where meds were finally changed. Final stop was a developmental disabilities unit for behavioral therapy and then home. Things were a little shaky and we thought it was just part of transitioning home. We have a wonderful behavior therapist that helped us navigate through some rough times. The hope was once he was back into his day treatment school and into his routine, he could settle. Unfortunately, that was not the case. This year has been exhausting.

And the hardest thing about all this madness is, as a friend of mine often says, no one bring a casserole.

These past three months were the second placement this year. He has been placed more than he has been home. It has been a physically and emotionally draining experience. It has stressed our finances. Free time is spent traveling to facilities for visits, attending meetings, making phone calls and doing research on offered treatment options. There were days the entire family would make the two-hour drive for a visit only to be turned away because he was unsafe. Resentment began to build. Family members felt robbed of weekends. Some of the things we were all feeling sound incredibly terrible and selfish – even in my own head. And the hardest thing about all this madness is, as a friend of mine often says, no one bring a casserole.

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Feb 08

Guest post: Autism and My Child: Getting Familiar with What I Already Know

Mama Bear is the mother of 3 young boys, the oldest suffering from Bipolar 1 Disorder and the youngest diagnosed with depression and possible Aspergers Syndrome. I write a blog to let go of my pain and to help support others by letting them know they’re not alone. Her blog is here: http://mysonhas2brains.blogspot.com/

mapMy recent experience in having my youngest son assessed for autism spectrum disorder has taken me for a bumpy ride. At first, I went through a period of grieving that made it hard to eat and sleep. This was surprising since I never went through this stage with my oldest son when he was diagnosed with a mood disorder. Sure, I was devastated at times, but I didn’t struggle with a feeling of loss so abruptly. I think it was due to my desperate need for my oldest son’s rages to stop and my understanding early on that he had a brain problem. Where with my youngest, I had always believed it was just a stage that he would eventually outgrow. Next, I struggled with my guilt and shame for not seeing my son’s symptoms sooner, I felt like a terrible mother who now had 2 kids cursed with a disorder. As I started getting down to business, preparing for our appointment with the Neurologist, I was forced to face all the unknowns and to explore a world I was unfamiliar with. What followed was a long, slow exhale and a feeling of peace. Continue reading

Dec 12

Holy MTHFR!

If I say MTHFR, then Methylenetetrahydrofolate Reductase are the two words that pop into your brain, right? No? Well, hopefully after reading this, you’ll see more than that swear word that caught your attention.

If I next mention bipolar struggles, rapid mood swings, depression, anxiety, heart disease, strokes, macular degeneration, miscarriages – and any of these issues hit home for you, then read on, because you might just want to know about MethyleneTetraHydroFolate Reductase – better known by its abbreviation – MTHFR.

MTHFR is a gene and like all genes, it acts as a light switch – turning on or turning off various body processes. In this case, MTHFR takes folate (vitamin B9) and methylates (converts) it into methylfolate (5-methylTHF). Hardly seems like a big deal, does it? Yet, if you belong to an autism, Pandas, Lyme or chronic fatigue group, you’ve probably noticed a big buzz around this thing called methylation. While the past decade has seen MTHFR studied in terms of cardiovascular disease and cancer, it turns out it might also be a very big deal for those raising kids with developmental, neurological or behavioral symptoms and for those fighting chronic infections.

Methylwhat?

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Sep 05

Repost: You are not alone!

This is a repost from the spring. Since then, much has changed in my life, but this feeling – that I am not alone, never alone in my feeling about being the mother to a child with sometimes baffling behavioral special needs – is still ever present. Since April, when I first wrote this, our blog readership has almost doubled, our Facebook community has literally doubled, and more and more people every day are finding us. As the person who runs this blog and Facebook page I’m faced with the need to accommodate our Easy to Love family by creating a forum – one where folks can post anonymously, if needed, but also a place where we can grow as a community.

In any case, I thought this was a good post to re-share at this time of community growth. This was the first time I talked to a group of parents about my experiences raising a child who is easy to love but hard to raise, and it was a powerful experience for me.

Thursday night I had the privilege of speaking to a group of parents at the Chesapeake Bay Academy, a special needs/learning challenges school in Virginia Beach. I was invited there to talk about our book. I thought long and hard about what I should say to these parents. I didn’t want it to be a book infomercial. I also didn’t want to read a lot, since listening to someone read is kind of boring. But I wanted to convey the main message of the book: as the parent of a child with an “invisible” special need, you are not alone. Continue reading

Jun 15

Gripped by Fear

I had the strangest experience the other day. I became totally overwhelmed with anxiety. Not your run of the mill worries. Not an “Oh man, this sucks, I wish I didn’t have to face this” kind of worry. I’m talking about an “OMG, the world is closing in around me, I can’t breathe or scream for help and no one seems to be noticing” kind of worry.

It didn’t matter that what I was worried about was being hugely exaggerated in my head. That if my fears ever did come true, it would be eons in the future. It didn’t matter that I knew many things would change in the coming years that could make all this wasted energy irrelevant. It didn’t help when I reminded myself that there were many people and backup plans to support me if my fears did happen to come true. I was gripped by unrelenting, dark, suffocating, paralyzing fear. I felt like I was being buried alive, watching the light disappear as dirt fell around me, squeezing away the air pockets that would keep me alive. I was utterly alone, isolated, terrified. It took enormous energy to get through each moment, feeling like the activities swirling around me – kids playing, dog barking, neighbors mowing the lawn – were actions in a movie. I was only watching. I wasn’t part of the life going on around me. I was instead held hostage inside my own head. A tightness gripped my chest, so tight that when I tried to take a deep breath, it only confirmed that I was suffocating, because no matter how much air I tried to suck in, no matter which relaxation trick I tried, it only left me feeling more deprived of air, more desperate, now even further from the calm I so urgently craved.

When my husband came home that night, I told him what I was feeling. He showed concern but there wasn’t much he could do. It was all in my head and I was the only one who could fix this. That experience – of trying to reach out for help, for connection – only made me feel worse, because it reinforced just how alone I was. I was the only one who could change this and since I felt powerless to conquer this overwhelming fear, I was truly, totally, completely screwed. Impotent. Doomed. Continue reading

May 21

Feeling Bitter and Taken for Granted. GRRRR!

Man oh MAN I’m in a foul mood right now. Angry. Sad. Bitter. And jealous. Here’s what happened that brought it all to the front. Not really THE REASON, but the trigger, if that makes any sense.

This morning I took Little J to his school’s speech therapist’s house for a 2-week intensive therapy session she’s doing with him and another child. He goes to an independent school for kids with special needs and we are really lucky that they are able to think outside the box and do things like this with him and the other kids when it’s possible. He’s there to be company for the other child, to be observed outside the setting of school, and to do focused listening therapy in the hopes that it will tell us something about his auditory processing issues.

I am all for this experiment, but I’ve quit holding my breath in the hopes that this – or any other therapies or medicines or treatments – will have any real, positive effect on him. FASD, or fetal alcohol spectrum disorder, is brain damage caused by alcohol exposure in utero.

Brain damage is brain damage is brain damage. Which doesn’t mean he can’t learn, but that his learning is limited. Slower. If the corpus callosum, the area of the brain that takes messages back and forth between the 2 halves, is small or even nonexistent, and the front lobes aren’t fully formed, which is what we suspect is going on with J based on his medical history and behaviors, there’s no documented treatment that can regrow or re-form those portions of the brain.

So when the speech therapist talks about ‘building new neural pathways’ in a brain that has serious, serious deficits, especially using techniques that have no research in connection with FASD (which isn’t saying much, honestly, since so little has been studied about therapies for people with FASD), I smile and nod, but I’m no longer hopeful. I’ve come to the bitter part of acceptance of my son’s disabilities. The part that most parents of kids with special needs don’t talk about. The part that’s tinged with grief.

So now you know my frame of mind, here was how this morning went down. I got up at 6 so I could make breakfasts and get everyone cleaned up and out of the house for 7:15. When J wakes up he is grumpy and rude, and I was called “bitch” and “idiot” and screamed at a couple of times for telling him to wipe milk off his face and to find his socks.  In between screaming at me he stops, smiles, and runs face-first into my body, saying “hugs.” When he does this sort of thing I find it really hard to reciprocate. At this point in my morning I am just trying to survive. Physical affection towards someone who has been, frankly, verbally abusive, is not top on my list.

While getting him and his brother ready I also had to watch the dogs – J has been bothering them recently. Not in a sadistic way, but in a ‘I’m stronger and bigger than you and I’m going to haul you around and tie you up’ kind of way, if that makes any sense. I really, really, really don’t like it when he does this to our dogs and I’m always on edge when he and the dogs are in the same space. And before you tell me to change the spaces they’re in, please realize that sometimes I have to do things like put on clothes and use the toilet, and the child is perfectly capable of letting himself outside so he can chase the dogs around the yard.

Anyway, we all get in the car, I drop J’s brother off, and J and I head to the therapist’s house, which is 50 minutes away. About half-way through his Kindle stops working and he starts smashing it against various surfaces, screaming swears, and making random nonsense noises. And then we hit traffic. And then I really, really, really start to need to pee. Really, really badly. Plus, I haven’t had breakfast and I can feel my blood sugar tanking. I have some hypoglycemia/blood sugar (probably stress-related) health issues that I’ve not been exactly ignoring lately, but I certainly haven’t been paying very good attention to. Suffice it to say I am not feeling great for the last 15 minutes of the drive.

When we arrive at the therapist’s house it’s all I can do to get out of the car without peeing on myself. I mumble hello-where’s-the-bathroom and stumble inside.

When I come out, much relieved, J is smiling and happy. The speech therapist is smiling and happy and uber calm. They talk about doing chores (which J has to be FORCED to do at home) and taking a little walk (again, a FORCED activity at home) and when she asks if she can give J a little snack of salmon or turkey in a while I can’t help it. I blurt, sarcastically, “Good luck!” Because if I were to suggest a snack like that at home it would not go over well. (Which, incidentally, is why J did not eat lunch or dinner the day before – he simply didn’t like it).

But I bet you a million dollars he eats that turkey or salmon. And I bet you a million dollars he will tell her he likes it. And I bet he feeds that dog and takes that walk and is sweet and kind and has a decent conversation with her, the kind I NEVER get out of him, because he’s too busy telling me how mean I am.

So that’s where I am this morning. Bitter. Taken for granted. And super jealous of his speech therapist, who’s getting to experience my boy in a way I never get to.

 

(image by flickr user Lucia through Creative Commons license)

Mar 12

Diagnosis: Bane or Blessing?

In the Huffington Post article, Is Sensory Processing Disorder the New Black?, the story of mom Samantha and how she handled identification, diagnosis, and treatment of her daughter Lucy’s neurobehavioral disorder matches closely my own experience with my twins who struggle with Sensory Processing Disorder (SPD) and pyroluria, and echoes the voices of many of the parents whose essays appear in Easy to Love But Hard to Raise: Real Parents, Challenging Kids, True Stories.

Like Lucy, my boys presented with a wide variety of symptoms, each of which could be connected with a handful of potential diagnoses including Aspergers, Attention Deficit Hyperactivity Disorder (ADHD), and Obsessive Compulsive Disorder (OCD), but no disorder on the books described our children completely. Also like Lucy, when we turned to our naturopathic physician and modified their diet and nutritional supplements, we began to see dramatic improvements. Those around us said, “Perhaps they’re growing out of it,” but we knew that behind the improvement were desperate, hard-working parents searching for a solution, unsatisfied by a band-aid.

Next year, my 8-year-old boys will likely test out of their public school special education status. Our lives look drastically different than when we entered preschool three years ago. We wouldn’t be where we are now if we hadn’t found our SPD diagnosis and opened our minds and homes to changes in diet and supplements with help from our naturopathic physician, Jean McFadden Layton, nor would we have maintained our sanity in the process without the supportive community here at Easy to Love….

Article authors Heidi Brod and Kelly Dorfman, MS, LND seemed to be writing about us all,

“Samantha stopped blaming herself for a child overwhelmed by anxiety and mood issues. She also started to realize the depth of a mother’s guilt. It sapped all of her energy, leaving her tired and depleted. I think of Samantha’s story and I’m reminded as a woman and a mother, that at some point, we need to be detectives, follow our own hearts and instincts. Nobody knows our children better than we do. We also need to give ourselves a break.”

So here’s to all you tired parents reading this blog and the HuffPo article, seeing some part of your life or your children there. Brod and Dorfman are right, you deserve a break, so give and take it freely.

Feb 14

An (un)Happy Valentine’s Day morning

When I signed up to write a Valentine’s Day blog post on this blog, I truly intended it to be a list of all the ways I love my little bundle of joy. Seriously. There is a lot to love, but because of this morning I am not feeling it.

I’m not feeling love. At all. Just tolerance. And only because he’s my child. If he were not my child, if he were a boyfriend or a friend or even someone I was married to or another family member then this relationship would have ended a long time ago.

I know that sounds pretty shocking. I’m kind of shocked writing it. But it’s the truth. Because my child has brain damage due to in-utero alcohol abuse by his birth mother, and because he experience trauma before he came to me, he has some problems with attachment. Not full-blown Reactive Attachment Disorder. Maybe half-blown Reactive Attachment Disorder. Because most of the time he can be a part of our family to the best of his ability, given that he does have significant brain damage and social skills problems and impulsivity and a mood disorder. But sometimes he can’t. Most mornings he can’t. And this morning, oh, THIS MORNING, this VALENTINE’S DAY MORNING, he really, really, really couldn’t.

Here’s how it went down. Continue reading

Feb 14

Hey girl. This one’s for all you parents of kids with attachment disorder.

I had kind of a difficult morning. I’m going to write a real blog post in a minute, but in the meantime I made myself a Hey Girl to cheer myself up.

This one goes out to all you mothers of children with attachment disorder, be it full-blown RAD, mild attachment issues, or anywhere in between. Love you. Take care of yourselves today.

Hey girl for parents of children with attachment disorders

Feb 02

ADHD & Hypomanic in the Principal’s Office

“If you want to know where your heart is, look where your mind wanders.”  – Unknown, scrolled in the middle of a fluffy cloud on the side of a light blue coffee mug in a gift shop.

First, I know where the heck my heart my heart is. Second, my mind does not wander. In the middle of the night, using the distracting cover of dreams, my mind makes plans and plots quietly in secret. Then, sometime during the day when my guard is down, and when it can do the most damage, my mind breaks out of prison and flies into the high grass laughing like mad, the blood hounds braying in pursuit far behind.

It’s a couple of years ago, before we moved from Hawaii to Georgia.  I’m in a meeting with a principal at a private school where I’m being hired to do my ADHD show, Pay Attention. The principal, a kind and thoughtful woman in her thirties, has seen me do the show and thinks it’d be good for the teachers to experience ADHD “from the inside.”

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